Le Bonheur’s Tuberous Sclerosis Complex (TSC) Center of Excellence is a leader in the clinical care and research of TSC, a genetic disorder that causes tumor growth in organs throughout the body. Le Bonheur’s TSC program is designated by the Tuberous Sclerosis Alliance as a Tuberous Sclerosis Center of Excellence. To achieve this designation, the TSC clinic must have a high level of commitment to TSC care, subspecialties available relevant to TSC, education resources and participation in clinical trials.
Why Le Bonheur’s Tuberous Sclerosis Complex Clinic?
- Our TSC clinic is one of only 12 in the world designated by the TSC Alliance as a Tuberous Sclerosis Center of Excellence.
- Our physicians have decades of experience in specialized care for TSC patients and have been closely involved in developing new treatments.
- Our Neuroscience Institute has the most advanced diagnostic tools available to help families and the medical team make the best decisions for each patient.
- We are actively involved in clinical trials for TSC and use the latest treatments available to care for TSC patients.
- We offer education and an online support group to families with children who have TSC.
- Our TSC clinic provides telehealth options in the following states: Arkansas, California, Colorado, Georgia, Illinois, Indiana, Kentucky, Louisiana, Michigan, Mississippi, New York, Ohio, Oklahoma, South Carolina, Tennessee and Washington.
Comprehensive TSC Clinic
Our multidisciplinary clinic gives patients access to pediatric experts in nephrology, cardiology, neurology, ophthalmology, dermatology, developmental pediatrics, pulmonology and urology in one setting -- from childhood into adulthood. The clinic is led by physicians with decades of experience treating TSC and working on the cutting edge of new treatments and therapies.
Pediatric Nephrologist John Bissler, MD, is director of the TSC Center of Excellence. Neurologist James Wheless, MD, serves as the co-director and Thomas Yohannan, MD, serves as the clinic's pediatric cardiologist. Both Dr. Bissler and Dr. Wheless serve as members of the Tuberous Sclerosis Alliance’s Professional Advisory Board. Pediatric Neurologist and Neurodevelopmental Specialist Tanjala Gipson, MD, leads Le Bonheur's TSC-Associated Neuropsychiatric Disorders (TANDs) Clinic.
The clinic also hosts educational programs for families and helps ensure all receive the best care possible. Through the Tuberous Sclerosis Alliance, we are able to provide families with information to understand TSC and better communicate with their child’s school and teachers.
Tuberous Sclerosis: Building a complex program from Le Bonheur Children's Hospital on Vimeo.
Le Bonheur’s TSC Center of Excellence provides the most up-to-date treatments based on your child’s needs. Our researchers are constantly searching for new methods to help children with TSC.
- Medications – a wide variety of medications are available to manage the symptoms associated with TSC
- Epilepsy Monitoring Unit (EMU) evaluation – some children may benefit from a stay in our EMU to record and diagnose seizures to assist in forming a treatment plan
- Kidney cyst decortication – a minimally-invasive procedure, surgeons are able to reduce the number of cysts on a child’s kidneys and prevent cysts from returning
- Epilepsy surgery – when medications aren’t effective, various surgery options are available for our patients
What is a typical first appointment like?
Patients and families who come to the TSC Center of Excellence at Le Bonheur will work with a nurse coordinator to schedule their visit. Le Bonheur’s TSC Clinic provides all appointments with multiple specialties into one day, so that your child can have a complete diagnosis and treatment plan. Some of the specialties your child may see include:
- Developmental Pediatrics
In order to get an accurate picture of your child’s condition, they may need to have imaging procedures completed prior to the appointment or at the appointment. Our nurse coordinator will help to ensure all the proper imaging is scheduled. These diagnostic tests may include:
- MRI of the brain and kidneys
- CT of the chest
- Ultrasound and EKG of the heart
If your child has already been evaluated by other doctors, we try to get that information prior to your appointment with us. Please bring all medical records, medications and dosages to your appointment. For more information about our TSC clinic, call 901-287-7492.
Traveling to Memphis
- Out of town families may be able to stay at FedExFamilyHouse, a 75-room and suite facility for out-of-town families with children receiving treatment at Le Bonheur.
- Places to stay
- Family-friendly activities in Memphis
The physician researchers who care for TSC patients are also involved in studies to better understand the disease and develop innovative treatment options. View the latest research from our neurologists and nephrologists.
Our physicians are leaders in the treatment and research of TSC. They have shared their knowledge at the International Research Conference on TSC and Related Disorders hosted by The Rothberg Institute for Childhood Diseases and the Tuberous Sclerosis Alliance.
Le Bonheur’s TSC Center is part of the TSC Alliance’s Biosample Repository and Natural History Database. This biorepository stores samples of blood, DNA and tissue from TSC patients for researchers to use to advance treatment, test potential drugs and discover biomarkers of TSC. Samples are collected on a volunteer basis. If you are interested in participating contact us at 901-287-7492.
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